It has been too long since I have put the proverbial pen to paper. Life has been hectic, to say the least. Just as you think that you have a minute to spare for a quick post, six months have passed and then something else seems to crop up that needs more attention at that moment.
I have three chronic (and sometimes very debilitating) diseases. They are ankylosing spondylitis, fibromyalgia and hyper mobility – couple this with major depressive disorder. Yay! So much fun in a career that is renowned for its high stress levels and fast paced days. The more stress, and the longer the period of stress, the more the diseases rear their ugly heads. There isn’t a day that passes that I do not have enormous pain. The level teeters between crazy bad an in tears bad and not being able to move. The trick is to try and get up every day, put a smile on your face and continue with the best and most favoured lie of all time “I’m fine!”
On the days that are good, meaning that it’s easier to smile and actually get things done, I tend to forget my limits and then go all out trying to get everything done while feeling in a semi decent state of almost normality. Pity about that – because I generally tend to overdo things and then end up regretting it for the next few days with it being almost impossible to move. Can you imagine going to your boss and booking off sick because you did too much ironing the day before! I have great difficulty in finding a balance in my life, to be able to do everything that needs to be done and listening to the boundaries that my body is insisting on.
I have mentioned before that part of my “charm” is an array of OCD traits. These seem to rear their head at a time when I least need it. Mostly, of course, when my stress levels are at their worst. Then of course the stress levels are worsened and the pain worsens exponentially to that.
There is no cure for these diseases, as much as I wish and pray that there was. The best that one can hope for, is that we can get the symptoms under control and slow down the progression. This is a fine balancing act between killing my immune system, but also leaving enough of it that I don’t get ill from every germ that might decide to cross my path. This is especially tricky being that I deal with throngs of people every day at work.
Both the AS and the fibro are all encompassing diseases. Each of them attacking various parts of my body. This often leads to unexpected injuries that you take for granted that it is just another pain. The danger in this is that you end up doing irreparable damage. I once walked around on a broken leg for a week. It was only after the swelling wasn’t going down that I decided to get it seen to. The AS is a form of rheumatoid arthritis and is most prevalent in my spine, hips and shoulders. Although, my ankles, wrists, hands and neck are also affected. Not only are the joints affected, but strange sets of muscles too, for example the intercostal muscles between my ribs making it difficult to take deep breaths (because the muscles don’t allow the lungs to expand properly). The pain is all encompassing, exhausting, a continual fight with your own body to get through the most normal of every day tasks.
Every day is a struggle – taking handfuls of pills in order to be able to stand and function for the day. Sometimes I actually get it right but there are other days that it just doesn’t all come together and just trying to roll (fall) out of bed becomes mission impossible.
These diseases have robbed me of my active life. So often I have to cancel plans at the last minute. This kills me slowly inside. I cannot do some of the simplest things in life – like grate cheese, open a bottle without help, clip my bra strap behind me. Admitting these shortcomings is the most difficult. For most of my life I have been completely independent, and now more and more I have to ask for help. A humbling and frustrating position to be in.
More than anything, I wish to be pain free, to be able to do the things that I used to do with ease without the threat of bone crushing exhaustion and pain. Perhaps, one day there will be a better solution, but for now I continue to plod (sometimes crawl) along and get through each day, some how. I could not do it without my amazing team of doctors and specialists. They are absolutely phenomenal, always willing to lend an ear to my cries of agony. My GP and physio are especially phenomenal – even on the worst of days, they are there with words of encouragement and a gentle hug to let me know that things will be okay.
So until we find a better solution or a better concoction of remedies and therapies, I will continue to “be fine” and carry one each day as best as I can. I cannot promise that tomorrow will be tear-free, but I can tell you that I will do my best to get through the day and give of my best in everything that I do (albeit it slower than normal).
The art of learning to live. 
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